The Light of Life

By Bassie Gruen

FamilyFırst, December 6 2010  

“Your child will be a Frankenstein.” The doctor’s voice was cold and flat. “I recommend you terminate the pregnancy immediately.” The chilling pronouncement was followed by more words, an avalanche of words, each one ripping dreams and planting terror.

“A baby born with CMV, looking the way yours does now, can experience endless problems,” the doctor confirmed. “She may have hearing loss, vision loss, mental disability, autism, an undersized brain, cerebral palsy, and seizures. If she survives birth that is. Many such babies don’t.”

They looked at her in disbelief. Was she really talking about their child, the tiny baby they already loved, although they’d never met her? Could this delicate wisp of a being be the monster she was describing? Was she telling them to snuff out the life of their own child?

Rabbi Michoel and Tziporah Green had entered the doctor’s office a typical young couple — married a few years, living in Yerushalayim, husband the overseas director of Bnot Torah/Sharfman’s Seminary, wife caring for their young son and daughter. They had been eagerly anticipating the birth of their third child, the sweet swelling of their small family. They left with a terrible burden, a crushing load of shock and fear and gnawing uncertainty.

WHEREVER YOU TAKE ME

The Greens were back in the States, visiting family, when Tziporah started feeling flu-like symptoms. The baby growing within her was moving less, and she was concerned. Upon returning to Israel, she underwent a routine ultrasound and the doctors were alarmed at the amount of fluid they saw in her abdomen. They examined her further and became more concerned. There was an abundance of amniotic fluid, a cyst in the baby’s abdomen, and an enlarged liver. Such symptoms can indicate several different conditions — all of them fairly horrible.

The Greens consulted with Rav Shmuel Fuerst, the noted posek based in Chicago, who advised them to do specialized testing since some of the possible conditions would need to be treated from the moment the baby was born, requiring advance knowledge.

Testing revealed that the Green’s unborn child had a virus known as congenital cytomegalovirus, or CMV. While most people will contract CMV in the course of their lives (see sidebar), when an unborn baby contracts CMV it can have devastating and even fatal consequences. There was more testing, additional consultations. The doctors issued dire predictions and pushed the couple hard to prevent the baby from ever having to suffer. The Greens spoke to their Rabbanim who gave their unequivocal response — their child was a live being and they were going to fight for her until the end.

On the outside, everything was the same, Tziporah still walking the streets in maternity, Rabbi Green still the jovial teacher. Inside, an earthquake was shaking the foundations of their lives.  “This was one of the biggest challenges of my life,” says Tziporah. “I woke up each morning knowing that it might be my unborn child’s last day. Or that she might be born horribly deformed. I kept on davening, and turning to people I respect for chizuk. I tried to internalize the fact that whatever happened, it would ultimately be good. ‘Hashem, I don’t know where you’re taking me, but I know it’s for the best,’ became my mantra.

“It was hard to be surrounded by all these cute expectant women whose biggest problem was morning sickness. But then I reminded myself that just as they had no idea what was going on in my life, I had no idea what was going on in theirs.”

“I learned from this saga not to look at anyone else,” echoes Rabbi Green. “They have their lives, you have yours. Don’t look, don’t compare. Stay focused on what you have. It’s a lesson for life, one of the many we learned on this journey.

“Another lesson we learned was from Rabbi Dr. Ephraim Becker. ‘Don’t tell everyone,’ he warned us. ‘Only discuss it with someone if it will bring you closer to Hashem.’ We talk so much, spraying our thoughts everywhere. Don’t reveal unless there’s a purpose, unless the discussion will move you towards your Creator!”

The months passed. Michoel and Tziporah were suspended in time, their baby’s future a vast unknown. Each day was an eternity. Finally, they neared the end of the ninth month. This chapter of the nightmare was ending; what awaited them next?

A PERSON LIKE YOU OR ME

“We were told that the baby was breech,” says Michoel. “There is a famous segulah from Dayan Yisroel Yaakov Fischer, ztz”l, involving water from a particular spring, that is meant to help breech babies turn to the correct position. I called Dayan Fisher’s son and checked with him. ‘Yes, that was my father’s segulah,’ he told me. ‘If it’s meant to work, it will, and if it doesn’t, it’s not meant to work.’

“ ‘That sure covers all the bases,’ the cynic within muttered. But I still went to the spring and brought the water to my wife. It didn’t help. We were scheduled to go to the hospital on Sunday to try to turn the baby and then induce Tziporah. On Friday morning we rushed to the hospital, since Tziporah went into labor, and they needed to do a quick Cesarean. The baby’s abdomen was enormous, bloated with an outrageous amount of fluid. Had she been born naturally, she would have strangled during the birth. ‘If it’s not meant to work, it won’t work…’ ”

Today, the Greens are frequently stopped by admiring strangers who are taken with their daughter’s golden hair, blue eyes, and sweet personality. But when Michoel first glimpsed his daughter, the sight was very different. “She was seriously ill. Her skin was yellow, and she was terribly bloated. She was immediately whisked to the emergency section of the NICU. Tziporah and I soon followed.

“The doctors told us that she wasn’t breathing, she was bleeding internally very heavily, and they were draining odd-colored liquid from her body. ‘She has about an hour,’ we were informed. ‘Why put her through this pain? Say goodbye now and let her go peacefully. Don’t make her suffer.’

“I repeated the words that had been my lifeline ever since life overturned: ‘I do nothing without the direction of my posek.’ I called him and he told me, ‘She’s a person, like you or me. Do whatever you can to help her live as long as possible.’ ”

A SHABBOS OF MERIT

That was a long Shabbos. The Greens’ friends were busy creating a mountain of zchusim for the tiny baby. Some davened at the Kosel on Friday night. Others went to Rav Elyashiv’s Shacharis minyan so they could give the baby a mishebeirach in the presence of a giant. Rabbi Green went to the hospital minyan to daven. Someone asked him to be chazzan for Kabbalas Shabbos. He knew he was being given the opportunity to lead this diverse minyan, filled with all sorts of Jews, for a reason. He accepted the honor and made the davening as joyous and uplifting as he could. Congregants approached him after davening to thank him for bringing them into the spirit of Shabbos while they were mired in pain — completely unaware that a few floors above them, his newborn daughter was struggling for every breath.

Over Shabbos things started looking up. The staff had been giving the baby a relatively new wonder drug, Ganciclovir, from the moment she was born, and she was responding positively. For the first time, the doctors offered a report that wasn’t entirely filled with gloom.

The Greens named their daughter Ora Rachel. Ora, because she was their light during this inky period of fear. Rachel since she was born near Rochel Imeinu’s yahrtzeit. In fact, Tziporah went to Kever Rochel just three days after the birth, begging Hashem to help their child in the merit of the great tzadeikes buried there.

IT'S ON ME

Rabbi Green had been scheduled to go to the States for workrelated purposes very soon after the birth. It was the last thing he wanted to do, but Tziporah insisted, and his rav, Rav Yitzchak Berkovits, told him that if he had his wife’s support he should go. Back in Israel, his daughter was on life support. Every phone call might be bringing the worst of news. But for eighty-two hours, Rabbi Green became the genial, warm teacher that he usually was, focused on the prospective students he was speaking to in various schools across the country.

While Rabbi Green was waiting in the airport for his flight back to Israel, a childhood teacher he was still close to showed up. She brought him a fabulous dinner and a plain white envelope. He initially refused the envelope, but she insisted that he take it and go catch his plane. After clearing security, he opened it and to his utter surprise found a check written out for the exact amount of their outstanding medical expenses.
“I heard Hashem saying to me, ‘You were My shaliach to bring this child into the world. You did your job; the rest is on Me.’ I got tremendous chizuk from that incident.”

LIFE-SUSTAINING WINE

Ora needed a lot of tefillos. Michoel went to Rav Chaim Kanievsky, shlita, for a brachah. Rav Kanievsky blessed Ora, and Michoel then found himself pouring out his heart to the rebbetzin, telling her of his tiny daughter’s fight for life. The rebbetzin told him to wait a minute. She returned with a small container filled with wine. This wine had been used at Rav Chaim’s siyum haShas on Talmud Bavli and Yerushalmi. Give Ora the wine, the rebbetzin told Michoel, and there would, please G-d, be a refuah. And so, on a daily basis the Greens surreptitiously added a few drops of wine to Ora’s bottles of mother’s milk. Astonishingly, from that day on, there was clearly visible improvement. Her platelet numbers kept rising, and she was soon off life support. After two and a half weeks Ora was ready to leave the NICU, but she was still struggling in many areas. It took her an hour and a half to drink a two-ounce bottle. Once she transferred to the regular pediatric unit, where the patient-nurse ratio was much lower, she needed to have someone with her 24/7. Rabbi Green’s students at Sharfman’s readily pitched in, spending the nights caring for and feeding Ora. The family was blanketed in the warm support of relatives and friends.

ALWAYS HAPPY

After just six weeks, the baby that the doctors thought should never have been born was ready to come home. Her older siblings greeted her with exuberant delight; in their eyes she was perfect, and she’s remained that way ever since. Ora’s development has been slower than that of other children her age. She was greatly weakened, both because of the CMV and due to her hospital stay, and has needed a lot of therapy. In an instance of blatant Hashgachah pratis, one of the Greens’ older children needed some minor physical therapy and the therapist mentioned a new program that was just opening for babies with special needs, hosted at the beautiful new building of Gan Shikumi in Bayit Vegan. This revolutionary program offered every form of therapy under one roof. Ora was enrolled and soon began to thrive.

One of the requirements of the program was that the parents attend a weekly therapy group. The Greens, the only religious couple in the group, dutifully attended. The contrast between them and the other parents was stark. While the Greens had battled to bring their baby into the world knowing that she might be hopelessly deformed, there were some couples in the group who expressed feelings of bitterness at the “imperfect” children they’d been given.

It didn’t take long for the group members to realize that this couple was different, special. They soon started telling the social worker who led the group session that rather than endlessly discussing how they felt, they wanted to hear why the Greens always looked happy and appeared so positive. And so Rabbi Green began leading a number of the sessions, giving a Torah-based workshop.

The irreligious families imbibed thirstily from the waters of Torah, seeking and finding meaning in their challenges. Stereotypes were shattered, inroads made. The family who had arguably been most resistant to Yiddishkeit even visited the Greens in their succah.

SCIENCE VS. FAITH

Today, two-year-old Ora is a delicate blonde with an effervescent smile and bubbly personality. She has been talking for many months, and she recently started walking. She’s very much on the path to eventually being mainstreamed. Did the Greens ever think their “Frankenstein” would have it this good? Never, says Rabbi Green.

“Too often people are given terrible diagnoses during a pregnancy,” says Tziporah. “Realize that it really can be okay. There’s so much we don’t know. During my pregnancy, my battle was between science and emunah. Whenever I was in the hospital I felt down. But once I was home for a while, my emunah would be strengthened. So often there are errors, and even if the diagnosis is correct, only Hashem knows how it will play out. Never give into despair.”

Rabbi Green offers an example of the errors that can be made. “When Ora was very young, we were told that she might have microcephaly, an abnormally small brain. But we firmly told  ourselves that the doctors are finite, Hashem is infinite; we need to keep davening. A week later the doctors realized that they were basing their calculations on her birth weight, but because she had been born swollen with a great deal of fluid, that measurement was entirely inaccurate. Her brain was perfectly fine. Never count Hashem out of the picture — that’s the bottom line.”

Wash Your Hands of CMV

CMV is a common virus of the herpes family, which also includes chicken pox and  mononucleosis. By age forty, over half of all people will have contacted CMV. The virus is found in bodily fluids — saliva, blood, mucus, tears, and urine — and contact with these fluids can transmit the virus. Young children are especially prone to the virus, so anyone working with young children (or even caring for her own) should be particularly vigilant.

In most people, CMV is fairly innocuous. They may experience fever, sore throat, swollen glands, and fatigue. However, for people with a compromised immune system and for pregnant women, CMV is a serious threat.

Expectant women can pass CMV onto their unborn babies, and babies who were infected with the virus before birth (congenital CMV) may be severely disabled. One out of every 150 children born in the US has congenital CMV, and 20 percent of these children develop permanent problems, ranging from hearing loss to mental disabilities. In fact, CMV is the leading cause of disabilities; more children have disabilities due to CMV than to any other syndrome or infection.

So what can one do? There is no cure or vaccine for CMV, so prevention is the best course of action. And it’s surprisingly simple. A pregnant woman should take the following precautions, particularly if she has not yet had CMV (the risk drops considerably once someone has already had it):

• Wash your hands with soap and water for 15 to 20 seconds after feeding a young child, wiping a child’s nose or drool, changing a diaper, or handling toys.

• Don’t share food, drinks, or eating utensils with others, particularly young children.

• Don’t put a child’s toothbrush or pacifier into your mouth.

• Do not kiss babies or children on the mouth.

• Clean any surfaces that came into contact with a child’s urine or saliva.

Beineinu thanks FamilyFırst for sharing this inspirational article with us.